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My son positive galactosemia 4 years old now i am worried 😭😭😭😭

No diet soda

CAN SOME BODY PLEASE TELL ME WHAT FORMULA CAN I GIVE TO A NEW BORN WHIT GALACTOSEMIA🙏 WHAT FOOD FOR BABY CAN I BUY

Galactosemia weight gain foods my baby not weight gain pls 😭😭😭😭😭

Food pls

My daughter has a rare bone marrow disease called PNH and her cousin, my twin brother's son, has the familial cousin of her disease called spherocytosis. She has to have weekly treatments but it doesn't affect him like that. When he was about four and a half he had to have his spleen removed. But my nephew just had a second child who has galactosemia.

I have this curse and I am now legally blind due to this as I was no diagnosed till weeks into my breast feeding diet.

So what every video I watch has basically in the beginning been telling me is that since I have this I have retardation

I was born with galactosemia and went to the children's hospital every week until I was 8 years old. The doctors came in and said that I no longer had it... I tried Ice cream for the first time at 8. Now I'm in my 40s and reflecting back I've dealt with hypothyroidism and brain fog. The past 5 years I've gotten very allergic to dairy. Is it possible that the disorder can come back?

I have Galactosemia

Why give a choice on that screening? I'm 56 , I was let off the diet at age 12, I believe, they said my other enzymes would take over for the missing one. I would like info on that support group. Markpaul.23@gmail.com 😊 🙏

There's some info in this video that I question. They say you can eat fruit, the list of no-no's has alot of fruit on it. And alot of veggies. Don't take my word for it, go check it out.

Never meet anyone who also has galactosemia, good to see that there are so many people with it doing well.

Its wasnt God....it was the freaking nurse who insisted...

My son has galctosemia.... We gonna be tested on how much of this disease in dec 2020.... He is my first..

I've got galactosemia

My son has to

LACTOSE FREE DIET UNTIL 4 YEAR OF AGE AFTER IT OK TO EAT LACTOSE

Yes. This. Is. Very. Rare. Indeed. Glactocema. No. Milk. Products. At. All. In. Our. Life. Extremely. Rare. !!!! Dave

Hi I'm. David. I'm. 57 y.o. with glactocema. I'm. In. Washington. State. North. Of. Seattle. In. The. Mtns. I. Had. Problem s. Going. Threw. School. Grade. School. And. Hi. School. I was. Born. 01-14-1963. A. Doctor. From. Indea. Descuvered. WHUT. I. Had. WHUT. Was. Going. On. In. My. Life. My. Eyes. Are. Ok. By. The. Grace. Of. GOD. My. Personality. Is. Ok. Too. I. Hope. You. Folks. Get. This. Maybe. I. Could. Help. Or. If. You. Folks. Need. To. Know. About. Anything. I. Was. Born. In. Seattle. At. Children's. Orthopedic. Hospital. At. The. Time. No. One. Knew. Anything. About. WHUT was. Wrong. WHUT. I. Had. A. Doctor. From. A. Other. Country. Knew. WHUT. Was. Going. On. That's. Who. Helped. My. Parents. At. That. Time. In. 1963. I'm. Ok. I'm. Fine. No. Worry's. I'm. SO. THANK. FULL. THANKS. DAVE.

I came here because I saw pedialyte mention this on their bottle and not to take it of you have it. anyone know why?

My grand daughter was born in March and was diagnosed with Galactosemia .

Omg I had speech therapy for my galactocemia too I couldn’t say the L, Th, or R sound I still can’t say the R sound bc it was so bad my therapist gave up on me...

Hi! My name is Victoria. I am 7 and I have Galactosemia 😺

Hello everybody from here. Just today the doctor givme the news my baby has this glacosimia im worry what she can drink she has 2 weeks born pelease help

usmle squad turn up

My story of galactosima is very different. I’m Canadian and we don’t have a screening process here at all. When I was born I was a normal weight but almost right away my mom knew something was wrong. When I was in the hospital, a doctor that was visiting just happened to have read a paper on Galactosima and got me to Sick Kids hospital a few hours away. I was rushed there and tested at about two weeks. I just managed to dodge the Retardation but I do have learning disabilities, as well as a lot of trouble gaining weight. There was another boy born just after me in the same area with galactosmia as well, unfortunately he didn’t go to sick kids in time as was blind before they discovered his disorder. Our health care system needs to be updated. Also, for females with the gene, most of them are infertile. I was officially diagnosed being in full blown menopausal at age 19. I never even entered puberty, and had to manually take estrogen, but wasn’t told when to start so I’m under developed, and short.

I have galactosemia I'm 21 and I graduated got my license have a job and I've been told all my life you won't be able to do any of this stuff I've proved them wrong

It sounds like you have a very happy and healthy family. Keep up the great work. Galactosemia seems similar to PKU. I am a cognitive study major and hoping to become a bilingual developmental specialist sometime next year. I am hoping to set up an informational interview and job shadowing opportunity with a pediatrician on my way to catapult my career.

This is the second video I watch about PKU. I'm glad that parents are taking care of their kids' diets and that they grow up healthy. I am a future developmental specialist.

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Keep Up the Good Work❣️#BringOurChildrenHome💞 #LegallyKidnapped #MedicalKidnap #HospitalsAreInCahootsToo #ThinkTwiceBeforeYouEnterER#HospitalsSellKidsToCPSAndAreNowInOnItToo #NewbornBabiesAreBeingSTOLENFromMOTHERSafterBirth #HospitalsIgnorePatientRightsAndPrivacyConsentPolicies #HIPAA #Violation #BewareNoFamilyIsSafe #CPS$tealsKidsFOrCash #EndKidsForCash #TPR #CentralRegistry #CACI #Erased #Parent #ERASEDmother #ERASEDfather #ForcedAdoption #JusticeForMyNewbornSon #KyleJohn #HeeschCons #LegallyKidnapped #WITHOUTWARRANT #MedicalKidnap #ExigentCircumstances #TPR #CACI #CentralRegistry #KidsForCash #EndKidsForCash #MillionsOfParentsCannotBeWrong #OpExposeCPS

🤔 How Can 'THEY' Claim ‽ “EXIGENT CIRCUMSTANCES” ❇️ I (both Me & My newborn son) were ALREADY IN the PROCESS OF DISCHARGE.! ?... Me & My newborn son had ALREADY Passed Our 'DISCHARGE PHYSICAL EXAM & Me & the Hubby were just only Waiting for My nurse to remove My Newborn Son's Security band on his tiny little ankle / foot.. On July 12, 2018 At approx 3:16am 🤰🏻 I gave Birth to My Newborn Son 👶🏻 #KyleJohn Heesch★Cons 💋 Healthy babyboy💙 6 lbs 13 oz 18 inches long 💞 My newborn son was a day old when they took him. WE were actually Already in the Process to be properly discharged even both me & my newborn infant were Cleared for our 'Discharge Physical Exam' and was just awaiting the nurse's return as this was right before midnight 07.13.2018* It was almost 24 hours after delivery as Both Me, the Mother & newborn Baby were ALREADY APPROVED AND IN THE PROCESS TO BE FORMALLY DISCHARGED, at the last minute Thee Nurses staff (North Nurses Station) & thee Security Guards on duty STALLED Us thee Parents whom were unaware of being Reported to CPS, and were just patiently waiting for the removal of My newborn infant's STANLEY® Healthcare Hugs® Infant Protection System ankle monitor Security Band on his right foot. Nobody informed Neither Me, thee Mother nor Father there was reason to Believe OuR child wouldn't be safe with Us and so thee entire stay I was under thee impression all was good and well considering I was (skin to skin) bonding and caring for my newborn as thee natural Loving and nurturing mother I was reassured as I was being while My attending nurse constantly closely examined my interactions and attention level with assurance I was properly attending to my baby's needs, noone made no such mentionings of Concern as to why A REPORT WAS MADE AND NEVER DISCUSSION OF IT WAS BROUGHT TO MY ATTENTION , UNFORTUNATELY no medical staff attempted to disclose any info as they unprofessionally improperly intervened my DISCHARGE in progress as We were LITERALLY ABOUT TO BE RELEASED FROM THE HOSPITAL TO GO HOME, But as soon as we were about to head out Seriously & unbelievably the unimaginable occurred which 'THEY' USED AS AN EXCUSE TO KEEP US FROM GOING ANYWHERE ESPECIALLY ANYWHERE NEAR GOING TO HOME SWEET HOME so they Schemed Me & My fiancé with my newborn into confinement to My Hospital Room (false Imprisonment) so I declared (AMA) because I knew that 'THEY' were up to no good & as we unknowingly awaited the arrival of ONE Law Enforcement officer of San Bernardino Police Department , & 1 CPS SOCIAL WORKER FROM SAN BERNARDINO COUNTY (Central Office) CFS CHILDREN'S FAMILY SERVICES in Cahoots with this⚕️Medical Kidnap🆘 & Didso WITHOUT A WARRANT ⁉️❗THEY Violated My Rights !?!Brianna Ja'Nae Cons Seized by Hospital, San Bernardino PD, & CPS ! Without an Warrant , Civil Rights Lawsuit ? Baby was NOT TAKEN BECAUSE OF DRUGS IN HIS SYSTEM NOR MINE OR ANY OF THAT SORT. The Reason as to WHY CPS WAS ALERTED is I am on the CACI aka Central Registry for TPR in 2014. “Exigent Circumstances” without having an Warrant at the time he was taken into CPS Custody as use of forceful intimidation threats by an SAN BERNARDINO POLICE OFFICER as he and the CHILDREN'S FAMILY SERVICES SOCIAL WORKER of SB County entered my Hospital Room while I was already being processed for DISCHARGE after Both Me and My baby had Our 'Discharge Physical Exam' to ensure we we're ready to go home which after our vitals were taken My Nurse said we were all set and good to go and she was going to remove the Security band off my son's ankle just that she had to check on another patient first and she'd be right back so we could leave but at the last minute we were kept waiting and My Nurse. So I asserted MY RIGHTS AND so I declared (AMA) just in case , and Refused any further Medical Attention Services & no such LEGITIMATE reasons to keep Us against our will (false Imprisonment) when We were well on OuR way Home. IS WASN'T SUPPOSED TO BE LIKE THIS 💔💑💧

To be quite frank, and Totally HONEST & REAL Because of My Previous Prior Child Welfare History Case involving SkyBlue it's deemed a TPR = TERMINATION OF PARENTAL RIGHTS which then goes into thee lovely system DOJ = Department of Justice = commonly known as 'CENTRAL REGISTRY' or CACI Aka CHILD ABUSE CENTRAL INDEX Hospitals as I wasn't first of all aware of that such system exists anyway to begin with, but they have Entire Access to it's contents.. Such as a little keyboard keys and a computer mouse click here and there with the patient's info like NAME, DOB, & SSN = The list of ALL & EVERY SINGLE PERSON LISTED AS A REGISTERED CHILD ABUSER IN THE U.S.A. I Unfortunately Happened to be ENTERED AS ONE OF THEM By The Children's Protective Services Aka DSS/CPS back in 2014 when My Rights were Terminated, it wasn't until I gave birth to My 2nd child Aeriel Marie Heesch★Cons in April 20'16 that I figured something wasn't right because I was visited by 2 Social Workers from Escondido, CA San Diego County DSS / CPS & was told I tested positive for drugs which one of them was thee very drug I was administered by them which came out as an Opiate now I wondered how could this be when In Fact I was CLEAN & Sober, so there's no way I couldn't have there must have been a mistake and so I requested another take and Supposedly the test again came back the same, and was told I wasn't going to be allowed to leave and go home with my Newborn baby, that they were going to return with a warrant to remove her from my custody and that is exactly what they did with 2 police officers and at 2 days old My babygirl Aeriel was snached from my arms, after I left the hospital not too long after, on the way to our home all I kept thinking about was HOW IN THE . .. After being absolutely devastatingly heartbroken and crying my eyeballs out I took a moment to go through my Hospital paperwork and lo and behold , would you believe it that MY TEST RESULTS WERE ALL NEGATIVE Not Even A FALSE POSITIVE for Any & All Drugs tested for 😡 so the next day when I was scheduled to see her for our first VISITATION date when I arrived I met with the temporary foster-care parent and couldn't hold my composure and just had to share the good news that I in fact was innocent of their fraudulent claims and insisted that she too relay the message to her as well as the rest of her colleagues also that I would be definitely SUEING THE HECK OUTTA THIER AGENCY FOR FALSIFIED INFORMATION TO REMOVE MY DAUGHTER, afterwards I'd say maybe a couple of hours while we were out shopping I get in the car and notice I got a Missed call and Received a VOICEMAIL MESSAGE and it was from the Social Worker letting us know their wasn't going to be a COURT HEARING any longer that it had been cancelled do to the fact we were CLEARED of ALL ALLEGATIONS only thing was that there still be an investigation period of just 30 days and Aeriel was READY TO BE PICKED UP AT ANY TIME TO GO HOME WITH US ASAP. You bet your ; We drove Soo darn fast to whatever daycare looking center place as I skipped and ran to retrieve My precious babygirl, it was Soo surreal it was unbelievably awesome to hear those words I thought I'd never hear but to 😍see and feel her back in My arms MOMMA'S ARMS was simply AMAZING ❣️ That is how I figured out their little scheme. 🤔

My newborn Baby was NOT TAKEN BECAUSE OF DRUGS IN HIS SYSTEM NOR MINE OR ANY OF THAT SORT. The Reason as to WHY CPS WAS ALERTED BECAUSE WE SUPPOSEDLY ATTEMPTED TO FLEE THE HOSPITAL SO AS IT'S STATED ONTO THE LEGAL DOCUMENTS AND JUVENILE DEPENDENCY COURT REPORT PAPERWORK IT IS READ “Exigent Circumstances” is what thee Social Worker claims for The Removal of My newborn child without having an Warrant at the time he was taken into CFS/CPS Custody as use of forceful intimidation threats by an SAN BERNARDINO POLICE OFFICER as he and the CHILDREN'S FAMILY SERVICES Central Office in San Bernardino, California SOCIAL WORKER of San Bernardino County entered my Hospital Room while I was already being processed for DISCHARGE after Both Me and My baby had Our 'Discharge Physical Exam' to ensure we we're ready to go home which after our vitals were taken My Nurse said we were all set and good to good and she was going to remove the Security band off my son's ankle just that she had to check on another patient first and she'd be right back so we could leave at the last minute we were kept waiting and My Nurse “Michelle” whom just arrived for the Night Shift Change with my previous Nurse during the day, So finally since we weren't given a explaination as to why the Staff started to display an indifference attitude towards Us all of a sudden and noticed They Began to delay My Discharge process which was probably also as to why They were avoiding us when My Nurse never returned like she said so to be on the safe side I decided together with my fiancee' Jason decided it'd be best just to handle the matter the right way which is *required by LAW as we quickly reviewed their Legal Notices, Disclaimers / Privacy Practices & Policy* so in order to Protect My Family from any subjection of harm doing and malpractices from occurring as I've personally been subject to with past experience pertaining to another Hospital while being a patient there after delivery of another child of mine 2 years ago regarding a similar situation which I believe certainly was the wisest choice to have made as it is a CHOICE I HAVE EVERY RIGHT TO MAKE AND WOULDN'T YA KNOW IT IS STATED BY LAW AND PRINTED IN THEIR HOSPITAL'S NOTICE OF the Rules and Policies , Patient Rights and Responsibilities & Notice of Privacy Practices as a patient with Dignity Health Medical Foundation. So I asserted MY RIGHTS AND I INFORMED THEM THAT I NO LONGER WANTED TO BE KEPT AGAINST MY WILL NOR CONFINED AS I WAS SUBDUED TO CONFINEMENT WHEN I WAS JUST PATIENTLY WAITING AND WAS ONLY FOR A SIMPLE PROCEDURE SUCH AS NO MORE THAN A COUPLE OF MINUTES TOPS MAX TO TAKE OFF MY BABY'S SECURITY ANKLET so I declared (AMA) Against Medical Advice just in case , and Refused any further Medical Attention or Service since there was no none such LEGIT APPARENT REASON for their actions & behavior for keeping us there but as you can see they did that Anyways. 😡 But somehow & or SOMEBODY 🗣️ Tipped "THEM" Off by giving MY Real Government NAME. . That's when EVERYTHING WENT COMPLETELY SIDEWAYS & now they're bogus reasoning is *EXIGENT CIRCUMSTANCES 😵 Okay, pardon me for forgetting to add the MOST Important Part of This whole ordeal which PROVES FACT 100% ThaT My Theory & Research on the Persons on The🗄️🗃️ CENTRAL📇REGISTRY aka CACI Child Abuse Central Index🆔 ⚕️Is a pure case of defamation to the fullest extent 😡 Which is why I had decided to take that chance so I wouldn't be subject to another 👨🏻‍⚕️👩🏻‍⚕️MEDICAL 🕵🏼‍♂️KIDNAP✊🏻 📡♻️🗑️I USED AN 🚮DIFFERENT🤥 🚻 📋🖊️🤰🏻🤞🏼NAME❕♿🆕🆔 ☑️🆗🆒

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I called the Operater by dialing 0 on my telephone in my hospital room and We simply asked if it was Okay to go home and the Operator lady as you can hear her voice told me right before you see what is being recorded that we were allowed to leave just as long as we were to alert the charge nurse assigned to Me and baby and just needed to have our final Vitals checked and documented as the last and final requirement for proper Discharge as well as lastly having my son's security band removed from his foot which all was completed and CLEARED FOR DISCHARGE right up until the nurse was finished taking our vital stats she told us she had to attend to another patient momentarily but would quickly return to take it off and would be on our way to leave the hospital #HomeBoundMommyAndBaby 💏

m.ua-cam.com/video/niaOuKd5LWw/v-deo.html

Newborn Illegally Detained & Seized on 07.12.2018 * Hospital, SBPD Officer & CFS/CPS * #MedicalKidnap

I have Galactosemia and I'm the only one in the family who has it. I'm the first and only son

I have it

Love the 'Be Still My Soul' music in the background. What a comforting hymn to remind us of our Lord's sovereignty through the difficult tides of life.

i was born with galactosemia ,im older as im 55 im in seattle wa area. other then not having milk in my life, im ok ,im fine

This was a wonderful story. I can certainly relate. When my parents immigrated to the United States, I got screened for [Classic] Galactosemia. I too initially got severely ill when I was a baby and my life was saved because of the tests that are done in American hospitals. Today I’m an aspiring classical singer and prospective PhD student. I am happy to have stumbled upon this video, it was heartwarming to watch. In Atlanta, Emory is an excellent place where great research is being done, regularly. There are also conferences if you are interested. Kind regards

My 3 week's old baby diagnosed galactosemia..it's not easy for me asa first time mom. I'm becoming paranoid when was cried.

I’m 21 years old and I have Classic Galactosemia the worst of the stand. I died when I was born because they didn’t know about it.

Glacosimia gang where you at!!!!!!❤️❤️❤️

I'm sure a lot of the same people who don't like the bloodspot testing are also anti-vaxxers.

life can be hard but you can survive